My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge. Caregiving is about skilled nursing, competent social work, rehabilitation efforts of physical and occupational therapists, and the hard physical work of home healthcare aides. Yet, for all the efforts of the helping professions, caregiving is for the most part the preserve of families and intimate friends, and of the afflicted person herself or himself. We struggle with family and close friends to undertake the material acts that sustain us, find practical assistance with the activities of daily living, financial aid, legal and religious advice, emotional support, meaning-making and remaking, and moral solidarity. About these caregiving activities, we know surprisingly little, other than that they come to define the quality of living for millions of sufferers.

I lead her across the living room, holding her hand behind my back, so that I can navigate the two of us between chairs, sofas, end tables, over Persian rugs, through the passageway and into the kitchen. I help her find and carefully place herself in a chair, one of four at the oval-shaped oak table. She turns the wrong way, forcing the chair outward; I push her legs around and in, under the table’s edge. The sun streams through the bank of windows. The brightness of the light and its warmth, on a freezing winter’s day, make her smile. She turns toward me. The uneven pupils in Joan Kleinman’s green-brown eyes look above and beyond my head, searching for my face. Gently I turn her head towards me. I grin as she raises her eyebrows in recognition, shakes her long brown hair, and the soft warmth of her sudden happiness lights up her still strikingly beautiful face. “Wonderful!” she whispers. “I’m a Palo Alto, a California, girl. I like it warm.”

KLEINMAN: I think it’s the sadness, the sense of a deepening despair—that you realize that this is not going to go away. This is going to get worse. You realize that this is a terminal illness.

ABERNETHY: As Dr. Kleinman balanced his work and his caregiving, he says he found great meaning in the Chinese Confucian tradition he and his wife had both studied.

KLEINMAN: The deep commitment to family, the idea that family was central to everything that you did. The respect you have for somebody else—that your own humanness deepens as you engage the humanness of somebody else.

I found that that relationship became increasingly tied to my moral view of things—that I had enormous respect for her, that I felt that it was crucial for me to help her maintain her dignity. There is something remarkable about that feeling of being present with someone else, and I felt that for a long time in our relationship, and I felt that deepen as there were more acts for me to do. It was in the doing that I felt I was a caregiver. Not in thinking about it, not in talking to people about it, but actually doing it. The acts themselves I saw as moral acts.

The memory may go. They may not recognize who you are, may not remember from minute to minute what you said. But you can still see, in the way they respond to you, feelings, deep feelings that represent the fact that they know you’re important in their life even though they’re not quite sure whether you’re the husband or the son or what your name is and the like.

But by last summer Kleinman had come to realize that his wife needed more care than he could give. So, reluctantly, he moved her to a nursing home.

KLEINMAN: That was the most difficult thing. That is, that I had made up my mind that I would take care of my wife until the end, and I did it for seven to eight years until a point at which I recognized I couldn’t do it anymore. I couldn’t handle—and I’m a psychiatrist—I could not handle the agitation part of it, where she became so agitated and so distressed, and she really needed a safe place to be, etc., where she would be less paranoid and less threatened by things.

KLEINMAN: When you’ve been deeply in love with someone for 45 years and greatly enmeshed together, that issue of distance is a recognition that someone is dying, that this is approaching the end, that you yourself are preparing yourself for the end, and I think it’s very difficult. I think it’s very, very difficult. I found it to be extremely, extremely difficult.